Tuesday, February 22, 2011

The US Supreme Court has handled down its decision in Bruesewitz v. Wyeth and upheld the decision of the the Third Circuit. In a nutshell, it looks like the majority of the court found that vaccine manufacturers are not liable for design defects if their vaccines were properly licensed by the FDA and the proper warnings were provided.

Or, in other words, the only forum for vaccine injury claims is the so-called Vaccine Court.

Monday, February 21, 2011

Autism Speaks has apparently had enough of the vaccine-autism connection. Starting with a letter to the editor in the New York Times and ending with a post on their blog, Autism Speaks has said that it is time to change the conversation.

As Geraldine Dawson, Chief Science Officer of Autism Speaks, said in the NY Times -

The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own.

In the blog post, Autism Speaks outlines some of their current priorities -

The role of a multiple environmental factors that are potentially contributing to the increase in autism spectrum disorder (ASD) prevalence

New insights into the underlying biology of ASD that are leading to novel treatments

Ways we can address the medical conditions that impact the everyday lives of people with ASD, and

Programs that are being developed to help adolescents with ASD successfully transition to becoming happy and fulfilled adults.

I have to agree (for once) with Autism Speaks. It is long past time for the vaccine-autism discussion to come to an end. All of the sides involved have made their points abundantly clear and nobody is going to adjust their position.

The medical establishment has gone all-in on their push for universal vaccinations and has adopted strong arm techniques in an attempt to force parents to adhere to the vaccination schedule. They mean well, but this approach is going to come back to haunt them.

The other side (the so-called "anti-vaxers") have their problems as well. Their ranks contain quite a few people who are very, uhm, vocal and are quick to leap to the attack. While I can understand and sympathize with where they are coming from, I have to say that they can sometimes be their own worst enemy.

The problem boils down to the lack of solid data showing a link between vaccines and autism. Sure, there are studies both for and against the theory (mostly against) that purport to either prove or disprove the link. And then there are the conspiracy theories abound as to why there isn't better data.

But, at the end of the day, none of that matters because we still don't have any real idea what the biology of autism looks like. It is one thing to say that autism is made up of these sets of behaviors. It is another to be able to point to the biological causes of the disorder and have some clue as to how it can be corrected.

So I applaud Autism Speaks for trying to shift the conversation from one possible factor to how to deal with autism as a whole. Lets just hope it works.

Monday, February 7, 2011

Reality is the state of things as they actually exist, rather than as they may appear or may be thought to be. Reality is value-neutral, it does not cast judgment on the rightness or wrongness of something. So when we talk about "reality", we are talking about what things are rather than what we would want them to be.

I believe that it is very important to deal with the reality of a situation rather than some abstract notion of what could or should be. It is crucial to fully grasp the idea of what something is before you move onto the why it is like it is or what it should be like.

You may not like what reality is and you are always free to try and change it. But to do that you have to understand what exactly it is you are dealing with and what steps are required to change it. The worst possible thing you can do when trying to change reality is to just pretend it is something other than it is. When you do that you not only deny reality but also lose your ability to change it.

I like to call pretending that reality is something other than it is denialism. Denialism is a problem in the autism world. There are many "autism advocates" who, for whatever reason, seem to feel the need to pretend that autism is something other than it is or pretend that life with autism is something other than it is.

Consider this recent post by a semi-retired neurodiversity blogger. He is clearly very proud of his son and I don't blame him. Every parent has the right (and the duty) to take pride in their children's accomplishments. If that were my child I would be proud too.

But the problem is this gentleman has basically indoctrinated his son with a false reality about autism. He denies doing so, of course, but no nine year old (with or without autism) has the mental capacity to grasp what exactly autism is or deal with the realities of the difficulties that autism can bring. Hell, for that matter, most adults don't have the mental capacity to really understand autism either. My experience has taught me that is very difficult for anyone to understand the reality of autism unless you live it or it impacts your daily life. That goes double for the more severe forms of autism (and other major disabilities).

So while this gentleman is quite proud of his son, my older daughters just turned six years old and still don't have the communication skills to express basic concepts. His "autism" reality is that his nine year old son questions the medical model of autism while mine is that my six year olds can barely express their basic needs.

As an example, just this past week Twin B developed a double ear infection. Those of you who have had ear infections before know that they can be uncomfortable at best to downright painful at worst. Yet, because of her autism, Twin B lacks the communication skills to express that her ears hurt. She suffered in silence, unable to tell us that she was in pain. The only reason that we knew about the infections is that she happened to have a doctors appointment and they checked her ears.

But, if this blogger is to be believed, the reality of "autism" is that autism is just a difference that needs acceptance. It is somehow more important to "take down" discrimination and let children like mine know they are loved and accepted for who they are than it is to take down a disorder that causes great hardship for my children. These words ring hollow in the face of my daughter being in pain and prevented from seeking help for her pain.

And this is just a trivial example.

The reality of autism for my children - and I suspect the majority of children with autism - is that it is not a quest for acceptance. It is a struggle to acquire enough skills to be able to survive in the world. Don't get me wrong, I want my children to know they are loved and accepted but I get the distinct impression that they would also love to be able to talk.

This rejection of a fundamental autism reality is the core problem with the neurodiversity movement and why I think of it as a sort of autism apartheid. This movement effectively segregates the autism world into the very high functioning minority and rest - and then tries to focus the entire conversation on the minority while ignoring the needs of the majority. Sure, you will hear the occasional lip service to the less fortunate ones but most of the conversation will be needs and wants of the "there's nothing wrong with autism" minority.

The majority of children with autism need real help just as much or more than they need acceptance. They need the debilitating symptoms of their autism to be eradicated.

Another recent example of denialism comes from this recentexchange of posts between Harold Doherty and Astrid. Harold is basically saying that the reality of severe autism is that people with severe autism are more vulnerable to abuse. He is saying this to raise awareness of the problem so that it can be prevented.

To me, these statements are a complete no-brainer. Autism can and does make people easier targets for abuse, especially if the victims are unable to communicate that the abuse occurred.

Yet Astrid feels the need to defend the virtue of autism and misrepresents Harold's point to mean the disability causes the abuse. She takes exception with the idea that the disability has anything to do with the abuse. She calls it "abuse apologism".

I call her response denialism.

I am not suggesting that a disability "causes" or invites abuse. Abuse of any form for any reason is completely inexcusable and should not be tolerated. But to deny the reality that severe disabilities, such as some forms of autism, play a role in abuse is absurd and downright dangerous to the disabled.

The reality is that a disability makes a person more vulnerable to abuse. You either accept that reality and take steps to prevent it or you stick your head in the sand and pretend that the disability has nothing to do with it and thus ignore the danger.

I know that when it comes to my children I would rather face what can be the grim reality of autism and try it change it rather than pretending it is something that it isn't. My children need more than just acceptance and love - they need someone to take down their autism. And, as I have talked about before, they certainly need to be protected from a world that they do not understand and from people who will take advantage of them.

Saturday, February 5, 2011

A CNN story is making the rounds about how Bill Gates called the autism-vaccine link an "absolute lie". Bill Gates made the following statement in response to a softball question from Sanjay Gupta -

Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

Of course, the usual sources are all up in arms about these statements. On the outraged side you have have Age of Autism and Adventures in Autism with the typical lines about lack of studies and buying attacks. On the flip side, you have Left Brain Right Brain with a "telling it like it is" and the Autism Vaccine Science Foundation plugging the interview.

I think both of groups are getting overly excited about nothing. Who really cares about a throw away line from Bill Gates? While his foundation does do good work around the world in helping prevent disease I don't think what he said was anything more than a typical PR fluff statement. It is a good thing that his foundation is pledging 10 billion dollars to help save lives. But what does Bill Gates really know about the subject?

If look at what Bill Gates said, you can easily see that he isn't that knowledgeable on the subject. Lets ignore the use of the phrase "absolute lie" in a sentence that makes a completely unsubstantiated claim - "killed thousands of kids" - and instead focus on the two specific examples he gives - the pertussis and measles vaccines.

The first, the pertussis vaccine, is easy to dispense with - Wakefield has nothing to do with the pertussis vaccine. He has not, to the best of my knowledge, ever published on the subject nor have I ever read about him discussing that vaccine specifically. But more importantly, if you actually take the time to look into the recent pertussis outbreaks, you would quickly see that they are happening for complex reasons not just because some small group of people are declining vaccinations.

So moving onto the second, the measles vaccine. Did Wakefield really have an effect on the use of the vaccine around the world for the past decade? While I am sure that he had localized effects in the US and UK, worldwide the picture is quite different. Vaccinations around the world have been rising and deaths falling for the past decade -

As the result of a vigorous vaccination campaign in which more than 700 million children have been immunized against the measles, the number of deaths worldwide fell 78% from 2000 to 2008, the consortium of organizations known as the Measles Initiative announced today. About 733,000 children died in 2000, compared with 164,000 in 2008, the group said.

I am not sure how you look at a 78% drop worldwide and come up with the figure that Wakefield and his ilk are responsible for "thousands" of deaths.

The problem is that people hear names like "Bill Gates" and assume that just because they are successful, rich, and (presumably) intelligent that they automatically know what they are talking about. Nothing could be further from the truth. Just because a person has done well in one area doesn't mean that they are automatically knowledgeable in another.

Bill Gates made his statements while acting as a spokesperson for his foundation and was pushing the agenda of his foundation. Since his foundation is doing good work that isn't necessarily a bad thing. But we really shouldn't read too much into what he said.